Ten tips for family caregivers of persons with mental illness

The onset of mental illness is a terrible happening in the life of the affected person and equally devastating for the rest of the family members. Overwhelmed families have to face their loved one’s mental illness and its impact on their lives without much information on how to deal with it. In India, families are the backbone of caregiving for persons with mental illness. Except for a few thousand admitted in mental health institutions, and some others who, unfortunately become homeless, millions of others are looked after at home by their family members, usually spouse, parents, siblings and /or other family members.

If you are a family caregiver of a person with mental illness, here are ten tips you should follow to cope with the situation:

1. Accept the Illness

Stigma is a major barrier preventing families from seeking treatment for their dear ones. Stereotypes and prejudice against mental illness causes concern about what people would think if they were to find out about the illness. Families thus show reluctance in accepting illness and seeking treatment fearing social exclusion.

Acceptance of the illness will help in overcoming the feeling of guilt and shame. An acknowledgement that the disease is real; is not likely to go away and is likely to put limitations on what the family member with mental illness can do, will make it easier for all. The family has to accept that a family member is having mental illness and needs treatment. Once the family accepts the mental illness, it becomes less difficult to plan, distribute responsibilities and make adjustments in living style.

2. Stay away from faith healers

Faith healing is widely used in India to treat mentally ill, even though there is no scientific proof for its effectiveness. Faith healing precedes other forms of treatment, since it is easily accessible. The stigma associated with going to a psychiatrist does not exist in faith healing. Even educated families fall prey to the belief that mental illness is caused by black magic, by evil spirits or it is a divine wrath for a sin/sacrilege committed in one’s previous life. When the mental illness strikes, the first thing families do is to take the family member to an exorcist or a holy man. They plan visits to shrines for a divine cure instead of visiting a psychiatrist or a mental hospital. The barbaric therapies, by witch doctors include, sacrificing a goat or a fowl, chaining the persons brought for healing, symbolising chaining the evil spirits possessing the bodies of the victims, chanting spells, poking them with hot iron rods, or beating them to exorcise the spirits. After wasting lots of money and time, it dawns upon the family that they should seek psychiatric help. But by that time the illness becomes chronic. As a family caregiver you must learn from others’ experience and stay away from such futile and barbaric rituals.

3. Start the treatment at the earliest

A mild start of illness, makes the families complacent as they confuse the odd behavior of the family member as a part of his/her nature and not due to an illness that requires treatment. It is much advisable to consult a psychiatrist even if it is a mild but lasting change. The treatment must start at the earliest as it can be disastrous to leave the illness untreated or to keep on postponing the treatment. It is a serious illness and proper early treatment is the only way to prevent aggravation. In mental illness, there is no such thing as ‘self-cure’ or ‘auto remission’. ‘Non Progression’ should not be mistaken as ‘cured’. If untreated, it can lead to the family member with mental illness becoming violent, making suicidal attempts, becoming a threat to self and others, withdrawn behavior hampering day to day life, disturbed sleep, loss of appetite etc.

4. Look for a good psychiatrist

Treatment for mental illness should be from a qualified and registered mental health professional (psychiatrist), never from a quack. When you are looking for a psychiatrist, look for one who is well qualified and has adequate experience in treating patients with mental illness. Another important factor is how much time the psychiatrist gives to each patient. There are psychiatrists who are so busy that they give no more than 4/5 minutes to each patient. Some give too many appointments during their consultation hours and it results in a wait much beyond the scheduled time of appointment. Many patients get restless and force their caregivers to leave without meeting the psychiatrist. Such psychiatrists, even if they have a good reputation may not be the right choice. Choose a psychiatrist who is not only well qualified and experienced but who also gives adequate time to each patient and who calls the patient in as per the appointment time.

While talking to the psychiatrist, give your observations about the affected family member’s behavior, such as what he/she has been doing and saying, and where and how often these symptoms occur, so that the psychiatrist has the necessary information.

5. Learn about the illness

Lack of awareness about mental illness comes in the way of families recognizing it as mental illness and starting proper treatment for it. The more you learn about the illness, the more effective you will be as a caregiver. Learn as much as possible about the mental illness. Look for books which provide information about the illness and go to websites where plenty of such information is available. Psych-education sessions for the family members, family-wise or in groups of families are conducted by some mental health institutions and NGOs. Such sessions help in a better understanding of the illness and clear stigma-related misconceptions which ultimately help in better management of the illness. These psycho education sessions, generally cover the basic information and understanding of the illness which families should have and include symptoms, signs of relapse, available treatments, common side effects, management of illness, handling emergencies, danger of relapse, treatment costs etc. Do attend such a programme if you are able to find one.

6. Take stock of available internal and external resources and their judicious use.

Prepare yourself mentally and physically for a drastic change in life style. Make an assessment of family situation, health condition of other family members, availability of time, man power, funds position, challenges ahead and then work out changes required in life style for lifelong care, adjustments necessary in personal, professional, and social life and changes required in personal needs and daily routine in the new role. The unaffordable cost is a major issue in mental health treatment. Psychiatric treatment is expensive, and private nursing homes more so, which pose significant financial constrain to treatment. Also the time spent for treatment is at the cost of day’s wages for many.

As a caregiver prepare yourself for adjustments you will need to make to find time, energy, and money. You may have to bear the expenses of the family member with mental illness including the treatment costs. You will have to curtail your social and leisure activities, and take leave more often. It may become difficult to hold a regular fixed hours’ job. Travel may have to be minimum and of short duration. Socializing and vacations may become brief and selective. If the family member with mental illness requires full time support, a short period relief will need to be arranged occasionally from another family member, or a relative, or a friend or any other volunteer or a paid caregiver to enable you to attend to outside chores like ATM withdrawals, essential shopping etc.

7. Seek cooperation of the family member with illness

Your family member may not believe that such bizarre experiences and behavioural issues are due to an illness and might resist any attempt for professional help. You may have to set time aside to convince the family member with mental illness that how the symptoms might get worse and illness become chronic, if there is a delay in seeking professional help. If he/she fears that it will lead to hospitalisation, reassure that if treatment is started early, a stay in hospital may not be necessary. You should find ways to assure the family member with mental illness that effective treatment is available for the illness which is related to the brain and can be treated with medicines.

8. Take Care against Burnout

Caregiving is strenuous. As a family caregiver you will remains under a great deal of stress every day. Over worked, you might neglect own health and well-being. If you need to provide continuous good care to the affected family member, you must care for your own wellbeing. The responsibilities of caregiving are in addition to the regular family responsibilities, and are bound to cause stress. This burden can affect your physical and mental health, which in turn may affect your efficacy as a caregiver. You need to remember that caregiving does not mean doing everything for the unwell family member. Let him/her function independently to the extent possible.

Overworked you may tend to neglect your own health and well-being and get burn out in the process. As a caregiver you may not get adequate rest and sleep looking after the family member with mental illness. It would be very taxing to provide intense care on a continuous basis. Please do only what is humanly possible. Do not push yourself too much. Look after your own health, go for walks; get enough sleep; have regular health checkups, eat healthy food. Learn to relax even in a stressful situation. Have brief breaks from caregiving chores. Pursue hobbies, e.g. painting, singing, music, cooking, gardening etc. Share worries and anxieties with friends and other family members who care. Accept that life must go on notwithstanding the illness and suffering of the family member. Pray if it gives solace.

9. Protection of Human Rights

The basic rights of the person with mental illness should be protected by the family. Mental illness often makes families overly protective or pessimistic about what the family member with mental illness can do or cannot do. Without being over protective or pessimistic, please ensure that the family member gets love, empathy and care. Treat him/her with dignity, civility, courtesy and empathy. Respect the independence and do not pressurize her/him to your line of thinking. Treat him/her equal to other family members. Involve him in family conversation and facilitate participation in social engagements. Please don’t force your choice on him what to wear, what to eat, when to sleep, when to wake up. Also please do no taunting about being a burden on the other family members or the high cost of treatment borne by the family. Insulting, humiliating or embarrassing the affected family member by highlighting the erratic behavior caused by the illness or isolating him/her when visitors come must not be done.

10. Preserving Records

It is a good practice to keep records of the behavior and the symptoms observed by the caregiver. The records should be specific, brief and not vague. Such a record will help when the psychiatrist records the history. The old prescriptions and other medical records should also be preserved and kept in a separate file. If you decide to change the psychiatrist, the new psychiatrist would like to see what medicines were given by the earlier one.

To conclude

Caregiving, will have its own rewards. It will bring contentment and joy when the family member under care will acknowledge the care verbally or will convey through body language. Whenever a family member or a friend or a professional will admire your effort, it will offset the trauma experienced during stressful time of caregiving.

Amrit Bakhshy
Amrit Bakhshy is president of SAA since 2010, and has authored a book on mental health and caregiving, which is available in English and Marathi. He is also on the Institution Body of NIMHANS and chairperson of their Hospital Management Committee.
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